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I don’t cry.

I mean I cry all the time at commercials and viral videos and meaningless stuff like that. But the big, real stuff doesn’t usually make me cry. Last week, I met with my oncologist to discuss beginning chemo. There was blood work, a somewhat nauseating talk with the chemo pharmacist about the side effects, and MRI scans set up for today. None of that, including talking about losing my hair (or my lunch on a regular basis) made me cry.

But this morning, I am crying.

My kids, Claudia especially, are having a hard time lately. At nine, she is grappling with what it might be like to lose a parent (not that I plan to be lost). She lies in bed suddenly feeling that she is “really here” and imagining what death will feel like. She is teary all the time and wants to fall asleep next to us like she did as a toddler.

So we talk. A lot.

We talk about fears and medicine and statistics and death. We talk about all the people who love her and our plans for the summer. We run fast trying to fill our time with cones on “free ice cream day” and family movie nights in hopes that the good things will crowd out the bad stuff. We make calls to teachers and therapists and we hug. We hug a lot.

And then, after they’ve all gone to school for the day, I sit on the couch, bring up some internet video, and cry for a minute because I can’t fix this for them and because later, when I’m in the MRI, and tomorrow, when I head to oncology, I will be brave. I will push through. And I will not cry.

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One short sleep past

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Mommy,

Twenty-four years.

You’re gone and I almost can’t remember what it felt like to have you here. I miss you often, although less the further I get from seventeen and the more my life becomes totally unrecognizable from the time we were last together.

I am sorry to say that I miss you most when I am sick or scared because that seems selfishly about me. But when I am lying in a hospital bed in the dark I imagine you crawling in bed beside me and brushing the hair from my forehead. I imagine hiding my face in your chest and closing my eyes. I imagine feeling safe and not having to be the one who makes unwinnable decisions. I see you in me as I lie in bed with my own, sweet littles when they are sick or scared, when I brush the hair away from their foreheads and snuggle them in close. Someone once loved me with the same fierceness that I love these three, and knowing that makes all the ways in which I am not loved less sharp.

Other times, I imagine you all around me. When I am having frank discussions with the kids about growing up I see my own uncomfortable face as you talked with me, but I also see how those conversations have served me well. When the house is full of laughter I think how happy I am that they are having happy childhoods like I did because the humor will serve them as well as the talks.

I daydream sometimes about you showing up at my door suddenly. How would I introduce you to everything: my marriage, your grandchildren, smartphones? Ugh, smartphones. You wouldn’t believe how things have changed.

Today, on the anniversary of your death, I remember what it felt like to lose you. I remember the fear that you would go and how hard it was to dare take a breath because each moment seemed closer to the end. I worry that I will do that to my children. I have set them up to love me so and I will leave them someday, probably before they are ready. With guilt, I remember that there was some relief that mixed with the pain, and I imagine that they will feel that too.

I have tried to piece together the very best of who you were –and you were wonderful– into the puzzle of who I am. There are kind, compassionate pieces, funny and irreverent ones along with my own good and bad pieces. There are the huge pieces of unconditional love which I felt growing up, but didn’t really understand until I was a mama myself.

I don’t believe in Heaven or reincarnation, but I like the idea that each generation moves toward something better. You worked to give me what you didn’t have. We talked endlessly with no subject off limits and I have passed that on. Maybe in the way that I no longer have to worry about Polio, future generations of “us” won’t have to worry about being caught off guard by growing up the way you did because no one talked about such things. Maybe my descendants won’t need the approval of their spouse or others quite as painfully as I do. Maybe someday the puzzle will come together perfectly, the good pieces from previous generations carried along, the bad ones discarded. Maybe within the borders of that frame will be you holding me close, my boundless optimism, your mother’s strength, my childrens’ humor. Maybe.

I have worked hard to live a good life. I have tried to be kind, to be happy, to enjoy the time as I have it because I knew that you didn’t have as long as you would have liked. In the end, I might not get much more than your forty-three years, or maybe I’ll live to one hundred. Either way, I know it was a good life. I enjoyed almost all of it and I deeply loved the people I shared it with.

I hope you felt that way too.

k.

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Super hero

Will is playing a game where he is a superhero. He said his particular super power is putting food in the ovens of people who don’t have any.

He said it’s really hard because he had to be fast. “If they don’t like what I put in there, I have to go super quick to change it into something they do like.”

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The time before us

This song just came on the radio from the summer I was 17. That summer I was newly orphaned and newly with Eric and I spent a great deal of time worrying: Would we work out? Would life workout? Would I work out?

So, the song comes on the radio, and I can feel it in my chest, how terrible it felt to not know how things were going to turn out. And I want to go back there and tell 17-year-old me, “You’re not gonna believe how great things will be. Enjoy this moment, it will be gone before you know it. Relax more. Breathe more. It’s all going to be okay.”

Which made me wish that a 20-something-year older me would come back in time when I am asking Eric, “Will I walk again? Will I? Will I?” and tell me, “You’re not gonna believe how great things will be. Enjoy this moment, it will be gone before you know it. Relax more. Breathe more. It’s all going to be okay.”

Oh, maybe she just did.

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The winter break that would not end

The kids were off for two and a half weeks for the holiday but were supposed to go back to school on Tuesday.  Well, they did go back on Tuesday, but with a two-hour snow delay. Then yesterday and today were snow days and tomorrow’s almost guaranteed to be one as well.

Ok, just level with me, I think I can take it. These kids are never going back to school, are they? *stifles a sob*

I cannot take another hour-long Lego Star Wars backstory discussion. I just can’t.

10917297_10152472765147133_2185899052369666676_nThere is a loooong story to go with the Star Wars (and one random Ninja Turtle) invasion of the Lego Friends town. Something to do with overthrowing the farmers market and local vet, no doubt.

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When the real fun began

Things are not going well.

After surgery, which lasts almost eight hours, I am in recovery alone for another sixty minutes or so before being moved to my room.  When I get there, there is no sign of Eric. For some reason, despite organization and technology, no one at the hospital ever told him to come to me.

I ask the nurse to let my husband know how to find me and he returns to tell me that Eric is nowhere to be found.  I am surprised but drowsy and I figure that Eric will come in any minute.  He does not.

Two hours go by and I call to the nurse again. “He’s not in the waiting room?” It is evening by this time and we have been apart for almost twelve hours.  I can’t imagine where he would have gone to since, even under the worst circumstances, he must have assumed that the surgery would be done by then.

Panicked, lonely, and in pain, I start to realize that something else is wrong: for the first time in six surgeries I have awakened unable to move my legs.

I try to remain calm and ask the nurse to call Eric on my cell phone, which he had because of course you are not allowed to take cell phones with you to surgery. So, although I could fix all of this in a heartbeat if I just had that tiny computer in my hand, I am instead lying helpless in bed three hundred miles from home.

The only possible silver lining is that Eric has my phone. Because his phone wouldn’t text in Chicago and he needed to let people know once surgery was over, I know that he has mine on and with him rather than it sitting in the bottom of my purse somewhere.  Sadly, I have a vivid flashback of turning the phone to silent and handing it to him that morning and now I realize that unless he is looking right at the phone when it rings, he’ll never see that someone was trying to reach him.  Add to that the fact that my own phone number is the only one I know by heart and the panic sets in again.

I ask the nurse to try to call Eric (since I cannot make long distance phone calls from my room) and blurt out a series of numbers that I hope will lead to my husband.  The nurse returns and tells me they do not and that maybe ten hours after I last saw him, Eric has gone out for coffee.

I am still druggy post anesthesia and I begin to imagine that he is hurt or dead.  He is missing in a strange city and that I am lying in a hospital bed paralyzed and unable to get to him. I cannot recall a single person’s phone number and the few local numbers I can pull from my brain belong to businesses that are closed now. It is after five and I realize that I will have to wait until morning and then call Eric’s office back home to start getting help.  It is the absolute worst feeling I have ever had.

On another floor, Eric starts to wonder what is taking so long.  He was told hours ago that I was out of surgery and that he could see me soon.  Within a half an hour he asks a woman in the waiting room (where he had been without even a bathroom break for more than twelve hours) when he might see me and she sends him in the right direction.

And suddenly, once I hear his voice come into my room, I know the worst was over.  Tied in tubes and unable to move I call out to him from the hospital bed, “I’m so glad you’re not dead!”

“Thank you?  Why would I be dead?” He asks and I begin rambling about how long the last few hours felt, how I worried that he’s been shot or in a car accident. “Funny you should say that.  Someone did crash into our car in the parking ramp, but I’m fine.  How are you?” he asks.

“Funny you should ask.” I take a deep breath. “I can’t move my legs.”

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The night before

5697632_origAfter an hour of talking to the neurosurgeon about how the surgery will go one thing is clear: it will be hard.

There’s a chance they will open me up, look at how the tumor is wrapped around the nerves, decide there’s nothing they can do surgically, and close me back up.

There’s a chance because they’ve done this so many times before, and because I’ve had radiation in that spot, that things might end badly (everything from spinal fluid leaks and infection to not being able to walk.)

He assured me that I wouldn’t die on the table and that having the surgery wouldn’t cause me to be in tremendous pain from here on out and that’s good enough for me. I’m pretty easy going and if need to be easy-going in a wheelchair or after a much longer stay in the hospital, then that’s what I’ll do.

In the meantime, I’m ignoring the fact that I have a 4:30am wake-up call and am instead enjoying this beautiful view from the balcony!

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